For kids with severe food allergies, it’s a matter of life and death

As Told To Lori Holzman Schwartz

One little spill, one moment of panic, and my worst fear became reality: my son went into anaphylactic shock. Because for kids with severe food allergies, it’s not just a matter of restricting their diets — it’s a matter of life and death.

Chaim was born perfect — clear skin, blue eyes, an Apgar score of nine — but something changed after the very first time he nursed while we were still in the hospital. His clear skin turned flaky and red. He looked like a sunburned tomato. He cried the whole time we were at the hospital and didn’t sleep at all. Chaim was my second baby, and my maternal intuition told me that something was wrong. I kept asking the nurses to take a look at him, but they dismissed my concerns. “It’s totally normal,” they told me. “He’s a newborn. He’s still adjusting to the world.”

When we took him home, things went from bad to worse. His skin was chronically red and peeling, and he threw up around 50 times a day. He wouldn’t sleep more than half an hour at a time, and only if I stood up, holding him upright. I would put my older daughter to sleep, and my husband would hold him for two or three hours so that I could take a nap before I stayed up with him for the rest of the night.

I took Chaim to dozens of doctors — pediatricians, dermatologists, gastroenterologists. The first few months, the pediatrician wasn’t concerned. “It’s just colic,” he said. “He’ll grow out of it. Babies are often fussy.” But my sister Ava, a nurse and mother of four, told me that babies didn’t cry like that unless something was wrong. As a mother, I could tell that my child was in pain. It hurt me to see him suffer. I took him to four different dermatologists. They gave us creams and steroids, which helped his skin for as long as we used them. But the second we stopped, his skin would turn red and peel again.

It was only after Chaim stopped gaining weight that the pediatrician began to take us seriously. Finally, he sent us to a pediatric gastroenterologist. The doctor knew right away that something was wrong. Normally, she would figure it out with an endoscopy, which would allow her to see Chaim’s digestive tract with a camera. But she didn’t want to put a baby that young under anesthesia to do the endoscopy. Without it, she could only take a stab in the dark at what was wrong with him. She put him on medication for severe acid reflux, but it didn’t help. Chaim threw up as much as ever.

Ava thought it might be allergies — she had a child with allergies, so there was a family history. We went to the allergist, but Chaim’s results came back negative! I only learned later that it’s very common for allergy testing to get a false negative before the child has been exposed to the food. It’s only once the child starts eating solids and actually ingests the allergen that the allergy will show up in a blood test.

At 11 months, the allergist finally gave Chaim his diagnosis: He was allergic to fish, dairy, eggs, peanuts, sesame, soy, mustard, tree nuts, and wheat. At 12 months, the gastroenterologist finally gave Chaim an endoscopy. She diagnosed him with EOE, or eosinophilic esophagitis, an immune system disease that occurs when the body has an allergic reaction to certain food or environmental allergies. Even if a food doesn’t set off an anaphylactic reaction, it could still inflame his digestive tract and make him sick. To test which foods triggered it, the doctor had to put him to sleep and take a biopsy of his throat and stomach. Chaim had to go through that six times!